Living With Sensory Differences, "Ask The Expert" Edition

In this picture Ben is running on the beach towards the water.  The beach is most likely a close second of his favorite places.

Living with sensory differences isn't always easy, so I decided to ask the resident expert on the subject, my six-year-old son Ben.

Ben and I often talk about how his body and brain give him certain strengths but can also be frustrating at times.

Here is a recent transcript of our conversation about Ben’s unique body and brain, shared with his enthusiastic permission.

Me:  What do you like best about your body?

Ben:  It (my body) has hands to get some coins and to look at the coins.

(Ben is a coin collector.  You can read more about his love of coins here.)

Me:  What do you like best about your brain?

Ben:  It thinks about states.

(Ben is also a huge fan of geography, particularly the United States.  He has a mental map of all the states inside his mind.  He can tell you more about where the states are located than pretty much anyone I know.)

Me: What makes you most frustrated about your body?

Ben: Hitting myself

(When Ben gets frustrated with himself, he’s developed the habit of hitting his head, to literally “knock some sense” into his brain.  He’s learning other strategies to cope with frustration.  The one that helps the most is squeezing a squishy ball.)

Me:  What makes you most frustrated about your brain?

Ben:  It makes mistakes.

(As much as we talk about mistakes being wonderful opportunities to learn, he still hates mistakes with a passion.)

Me:  How do you help your body when you get frustrated?
Ben: Squeeze my squishy ball.
(Squishy balls work better for Ben than taking deep breaths.  Pro tip- get a durable squishy ball.  It's even more frustrating when they break!)

Me: What do you do to help your brain when you get frustrated?

Ben: To get good thoughts in my brain, like coins.

(Positive thoughts are big around our house.)

Me: What is the hardest part about school?

Ben:  The gym and the bucket dippers.

(The indoor gymnasium is a loud place for Ben, and he wears noise-cancelling headsets to handle the noise.  “Bucket-dippers” are people who do unkind acts that dip into a person’s metaphorical bucket.  You can read more about them here)

Me:  What is the best part about school?

Ben: Science experiments and centers.

(Ben is definitely a hands-on learner and we love that his teachers work hard to meet his learning needs!)

Me:  Where is your happiest place to be?

Ben:  In my home with my home.

(Ben has a certain soft blanket that he absolutely loves.  He calls it his home.  As soon as he gets home, he cocoons himself inside it with his squishy balls and his stuffed animal friends.  It is definitely his happy place.)

Me:  What makes you the proudest about yourself?

Ben:  I am a bucket-filler.

(Yes, Ben, you certainly are!) 

So...there you have it!

Many people try to explain sensory processing or autism, but the true experts are the people who live with these differences every day.  Each person's experience will be unique and a bit different, so in order to best understand the individual....ask.  And, if the person is unable to communicate verbally, watch closely and learn.  All behavior is communication.  

Every person, regardless of their abilities or functioning level, deserves respect.

Every person deserves to hear about (and spend time developing) their strengths at least as often, if not more, than their areas of weakness.

Every person deserves to feel safe, respected, and loved.

And...finally...every person deserves to be the author of their own story.

Welcome to the Sensory Blog Hop — a monthly gathering of posts from sensory bloggers hosted by The Sensory Spectrum and The Jenny Evolution. Click on the links below to read stories from other bloggers about what it’s like to have Sensory Processing Disorder and to raise a sensory kiddo!

An InLinkz Link-up

2027

 

My resolution is to help make the world a more inclusive place by the time my son graduates high school in the year 2027.

 The New Year is a time when many of us think about our personal goals and make resolutions for the coming year.  For example, we might resolve to lose weight, exercise more, or save money.   These are noble aspirations, but, in most cases (including my own), our willpower fizzles after few weeks and we revert back to the habits that got us where we were in the first place.

Lately I’ve been thinking about the future, and more than just the coming year.

I originally started writing this blog as a way for me to connect with the autism community, to educate and provide support to other families on a similar journey, and to help others understand autism as it directly relates to our family.

Those goals still hold true, but somewhere on this journey, my vision has shifted. At first, my view of autism was very narrow and focused on my son.  But, the more I read, researched, and learned, the more troubled I became about how society treats those with disabilities. 

I realized that there is more work to be done than I ever imagined. 

There is an insidious perception that pervades our society.  The perception is that somehow those with disabilities are “less than” the rest of us. 

Once you see this perception, it can’t be unseen.

For too often, therapies for autistic individuals focus on making them appear “less autistic.” 

Too much funding goes towards finding a cure for autism, and too little towards providing supports.

And, too much of the conversation centers around how autism impacts children (specifically boys) and not nearly enough about the realities facing autistic adults in the workplace and in society.

This has got to change.

We are seeing the direct impact on a generation of autistic adults.  If we listen to what they have to say, we can change the future for the better.  We cannot go back and change the experiences that these adults faced when they were children, but we can make sure that we don’t repeat the same mistakes on a new generation of children.

My goal is for the next generation- my son’s generation- to grow up in a world that values differences rather than conformity.   This society will have supports and structures in place to accommodate the very real needs facing the autism community. 

My resolution, if you will, is to do my part so that by the time my son graduates high school in the year 2027, the world will have structures and supports in place to support inclusion at all levels, in school, in the workplace, and in all aspects of society. 

Here is my plan to help with this change.

1)   Listen to the words of autistic adults and consider their message with all personal feelings aside.  Embrace their advice with humility and remember this is about my child and his future.

2)   Become involved with organizations that share my mission.  Many organizations are focused on finding a cure for autism.  I’ve reached a place where I no longer care what causes autism.  I am instead more focused on finding supports for my child now, but, more importantly, helping to build systems and structures to support him in the future.  Organizations such as The Autistic Self-Advocacy Network,  were created by autistic individuals and are where I’ll be lending my support.  I’m also involved at a local level with disability organizations that align with my mission in my own community.

3)   Educate others about autism acceptance.  Help others to shift their point of view away from autism as a tragedy by helping them to see the wealth of strengths autistic individuals bring to this world.  Help them to understand the importance of creating a more inclusive world for all of us.

4)   Continue to teach my child the skill of self-advocacy.  This includes teaching him to understand his strengths and how to ask for supports to address his areas of challenge.

5)   Make sure to tell my son every day, that I love him for the person who he is. Any adults who come into his life, whether they are therapists or teachers, family or friends, will always hear from me that our ultimate goal is not to change Ben into a “less autistic” version of himself.  Our goal is to raise a confident, happy adult who will make this world a better place in his own way.  Ben is lucky that he has so many wonderful adults in his world who love him for who he is.  This is my wish for my child, and for every child.

This is my New Year’s resolution for this year and for many years to come.

Unlike my other resolutions that fizzle out with time, I know I’ll stick to this one. 

The question is- will you join me?

Our work starts now.